Cataract surgery - the retinal detachment we weren't expecting

This is the third in a series of posts by my husband following his cataract surgery in late 2015, hopefully it will be of use or interest to someone going through the same experience. You'll find the first post, about the consultation process and the second about the operation in my sidebar.

Travelling back from my in-laws on 27th December I started to get flashes of light when I moved my eye. Due to my previous retinal detachment I knew this wasn’t good news, so early on the 28th we were in A&E at the Bristol Eye Hospital. Due to the way Christmas fell that year this was a Monday but was the Boxing Day Bank Holiday. The place was deserted of staff but quite full of patients.

When we finally got to see a doctor she looked as if it was all she could do to keep her eyes open. She looked like she was hanging. She barely looked at me, got confused about which eye she was talking about and sent me home saying she could see no problem but that I should come back in a fortnight for a review. I knew there was something wrong but what can you do.

Over the next couple of days I still had my flashes and then the ominous black shadow appeared. On New Year's Eve we were back in A&E which was thankfully better staffed. We saw a doctor (coincidentally the one who had dealt with my complaint several months earlier) who quickly issued a verdict – “Go straight to theatre, do not pass ‘go’ do not collect £200.” I had a retinal tear and detachment.

That was how I found myself on New Year's Eve lying in bed in a private room waiting for my slot on the emergency surgery list. Apparently there had been a number of emergencies come in that day so it was a full list. Between patients the surgeon came to see me to assess what he had coming through. I asked him at what point would I get bumped to the next day's list as it was too late to operate. His reply was that his theatre team weren’t going home until all the patients on the list had been seen to. For all the faults within the NHS you have to admire the dedication and professionalism of the clinical staff.

It was late, I don’t remember how late, when I was wheeled back to my room. I was lying on my right side which is a position in which I would spend most of the next few months. The operation performed consisted of sucking out the vitreous humour and replacing it with a gas bubble. They then laser around the tear to “spot weld” it back in place. The bubble will hold the retina in place whilst the blood vessels reattach hence the posturing to keep the bubble in the correct place. This was the simpler of the two options and was performed under local anaesthetic and block. My original detachment had been treated with a silicone buckle stitched to the back of my eyeball and was performed in a lengthy operation under general anaesthetic.

As an added bonus whilst they were in there they cut away the rear lens capsule thus treating my PCO in that eye. Apparently it gives better results to do this surgically rather than laser but is too invasive to do alone.

Once back in my room I had to lie face down for an hour and a half, I assume to prioritise pressure direct onto the area around the optic nerve being the most critical area to get attached securely. At this point my lovely wife went home. She had been through a lot, always by my side and now she had to get to bed. For the first time since we met we saw in the New Year separately.  Rachel was asleep and I was too until woken by the fireworks at midnight.

I woke in the morning hopeful that I was going home.  They had said I would only need to be in for one night and I wanted to escape as soon as possible. My eye had other ideas though. When they removed the patch I could see absolutely nothing. Not light and dark, not movement – nothing. The consultant couldn’t see anything either and this was potentially not good news.  I had a clot in the front of my eye that was obscuring all attempts for him to see the back of my eye and whether the surgery had been a success. Added to this the pressure in my eye was also very high. “We can’t send you home like this….” This was a real kick in the guts.

The morning after

I was now started on hourly drops for the pressures and antibiotics. Doing this from 6am to 2am meant I had very little sleep despite spending 50 minutes out of every hour lying on my right hand side. 

At 2am in Friday night / Saturday morning the nurse came in for my hourly drops to find me rocking on my bed in agony. I begged her for whatever pain relief she could give me. A dose of paracetamol as well as codeine was given and still didn’t take it away. It helped though. My pressures had gone through the roof. I don’t know what the scale is but under 10 is “normal”, 10-20 is cause for concern and I was over 30.

The next morning I started a regime of regular tablets to take the pressures down. These had an adverse effect on kidney function so now I needed daily blood tests as well. I also had an oral steroid to take the inflammation down but this attacked the stomach lining so I had a third tablet to protect my stomach. In my sleep deprived state I was starting to lose track of it all and just resigned myself to their care.

I was kept in for a few more days.  At this point the pressure had come down but they still couldn’t see into my eye and I couldn’t see out. It is very scary when they shine a light in your eye and you can’t tell. They still couldn’t tell if the operation had been a success but there was little to be gained from keeping me in so I was released back into the wild. Being at home helped my morale greatly and after a couple of days I started to see light and dark and then colours. A few more days and I had shapes and could count my fingers.  Small things become great achievements.

Our homemade drugs chart

As I started to see more I became aware of the bubble in my eye. It consumed about 90% of my eye so the interface between bubble and aqueous humour (which slowly displaces the gas) was a dark shadow across the top of my vision. As images are inverted in the eye and then corrected by the brain this was at the bottom of my eyeball.

Depressingly as my left eye vision started to improve my right eye started to deteriorate with the PCO. It's not major but it takes the clarity away.

A week after release and I was back at the hospital for a check-up. Progress, I am told, is good. They can see in and the retina looks flat. Pressures are down but the inflammation is still there along with the clot. It's now a waiting game.

The steroids I took gave me terrible indigestion but have to be reduced gradually. I hadn’t really thought about how serious a medication they were. To be honest at the time they started I was in so much pain I would have taken anything they gave me just to make it stop. Every time I decreased the dose I was taking I had terrible withdrawal symptoms. I was absolutely wiped out each time and had stomach cramps. Googling it revealed that the steroids reduce the production of adrenaline and it can take up to four weeks to start again after you stop taking them. Knowing this didn’t make me feel physically any better but it did reassure me that there wasn’t something else amiss.

The horizon in my vision gradually dropped as the gas was absorbed. It was very off-putting because when you move your eye the fluid / gas “sloshed” in your eye and the horizon breaks into waves. It can make you feel quite sick. The gas was supposed to be completely absorbed in 4-6 weeks. Six weeks after the operation I was back at the hospital for a check-up and was discharged despite still having the bubble remaining. We didn’t see the consultant and weren’t filled with confidence by the doctor we saw but I was due to see Ms Bailey again, so wasn’t too concerned.

Gas bubble in the eye means no flying

9 ½ weeks after the operation the bubble finally disappeared. The final bit went quite quickly and then one morning it was gone completely. 

Mid March I saw Ms Bailey again and was given the all clear. She performed the PCO laser on my right eye and finally discharged me. From first operation to discharge ended up being four months. From Optician referral to discharge it was thirteen months.

At the beginning of April I had my long awaited post operative eye test. I could have done it earlier but I had to wait in order to get an appointment with an optician I trusted. I’ve had so many bad eye tests over the years that I am very selective about who I see as it is a complete waste of time if they don’t do it properly.

The results were good. I was given the all clear to drive without glasses. My official distance prescription is now +0.5 in my left eye and 0.0 with slight astigmatism in my right. This is a hell of an improvement over -14 in each eye. Ms Bailey said she was aiming for slightly short sighted in each eye but that it was difficult to predict exact results. I was very pleased. My reading prescription is +1.75 mid distance and +2.25 for close reading. I was prepared for it to be in the +3-3.5 range so I was again pleased. I got some “Office” glasses which are amazing for computer use. They are a bifocal split between the mid-distance and reading prescription so I can see computer screen and papers. I also got some standard varifocals. These took a bit of getting used to and the first pair had to go back and be adjusted as the vision zones were in the wrong places and I couldn’t see anything out of them. After the adjustment they were much better. I don’t like them for reading (a book or magazine) as the reading zone is so small but for reading labels etc. they are ideal.

So roughly fifteen months after being referred I can see again and get on with my life. It would be easy to say the whole experience was unnecessarily stressful and took too long but that would be too broad a generalisation. More specifically, the administrative side of the NHS is too bureaucratic and it's an uphill struggle to get anywhere. The clinical staff from consultants and nurses to porters and caterers are a fantastic and dedicated bunch. They work hard under difficult circumstances and I think we probably take them for granted. The NHS is undoubtedly under-funded. If extra funding went straight to the front line then I would happily pay more tax to support it. However, too much is absorbed by the administrative hierarchy and more is wasted in non-critical areas.

It's easy to get annoyed and exasperated by the NHS but remember that it isn’t the nurse in front of you who is to blame. She’s doing her best to treat your ailment and make you feel better.

Cataract surgery - the build up

If you're a frequent visitor to my blog, you'll know that we had a bit of a difficult time at the end of 2015 and start of 2016 following my husband's cataract surgery. At the time I asked him to make notes, so that when I go through the same experience, I'll know what to expect.

I then thought, why keep it to myself? As it was a fairly drawn out experience, I'll serialise it over a few blog posts. Hopefully someone will find it of interest. I'm a bit eye-squeamish (unsurprisingly less so after the last year or so!) so hopefully if I can read the posts to edit them, they won't make you feel too queasy either! Now over to my guest blogger...

Rachel has asked me to write a piece for her blog to detail my recent treatment for cataracts. The first thing people usually say is “You’re a bit young for cataracts aren’t you?”  Being in my mid 40’s I’m no spring chicken but I don’t fit the usual profile for cataract surgery. 

I have always been extremely myopic. I started wearing glasses for reading when I was five years old and my sight has got progressively worse. When I was in my mid 20’s I had a detached retina in my right eye.  As it was explained to me, due to my elongated eyeball the retina was stretched pretty thin and had developed a tear. This tear allowed aqueous humour to get behind the retina and, like water behind wallpaper, it caused the retina to start to detach.  The treatment I was given was a silicon explant / buckle on the back of the affected eyeball (designed to push the wall of the eye in towards the retina) and also laser surgery to “spot weld” the retina and seal any tears. At the same time they performed pre-emptive laser on my left eye to try to prevent this being similarly affected.

What they didn’t tell me, and to be honest it would have made no difference if they had as it was vital surgery to save my sight, was that a common side effect of the laser surgery was premature cataract formation.

So fast forward twenty years to February 2015 and I find myself in the optician’s chair being told that my cataracts had developed to a point where corrective lenses couldn’t bring my sight up to any reasonable standard. I would need to be referred to a hospital for surgery.  It had been a steady decline over several years so I was aware it was coming but it was still a shock that I was going to need surgery.

The initial referral was to my GP.  Due to NHS bureaucracy opticians cannot refer direct to hospitals. I was warned that my GP would probably want me to see them for a discussion about treatment before referring me on but that it would all take place in about a week. After a fortnight of not hearing anything I chased the practice and all they could tell me was that they had received the referral letter but that nothing had been done with it. I chased a couple of times more, getting the same answer each time, until I received a letter through the post in mid March 2015 inviting me to “choose and book” my appointment. There were a selection of hospitals to choose from and I selected the Bristol Eye Hospital (the 'BEH'). Apart from my history of myopia and detachment I also suffer from iritis, an autoimmune condition which causes inflammation in the front of the eye. I assumed that it would be safer for me to attend the hospital that would have a detailed history for me rather than starting afresh somewhere else.

Unfortunately, the BEH is very popular due to its specialist focus and it wasn’t possible to get a date for an appointment and instead I received a “you’re in the pile” type of acknowledgement. Understandable but still not terribly helpful. After hearing nothing after a month I rang “choose and book” and was told I should hear soon. The next time I rang them (a couple of weeks later) I was given the details of the hospital team to ring and also advised of process for complaining to the Patient Liaison team at the hospital trust. 

I spoke to the appointments team at the BEH who were very rude. It was now May and I wanted to know when I would hear something and at least get an appointment date through. The lady I spoke to said, “I haven’t got an appointment to give you, what do you expect me to do?”.  Anticipating that NHS lack of resources would be involved somewhere, what I had specifically not done was to demand an appointment now / soon, I had just asked when I would hear what was happening.

Disappointed by the lack of compassion or understanding I reluctantly complained to the Patient Liaison Service. I didn’t want to make things worse for the Hospital but I was left with nowhere else to go. My written complaint was regarding the lack of communication and transparency. Little did I know that this would not be the only time I had to formally complain. I was initially contacted by someone who asked me what I wanted to complain about. I explained and her response was “What do you expect me to do about it, I can’t make you an appointment”. I was surprisingly, and somewhat uncharacteristically calm (I don’t suffer poor service well) but was constantly met with a negative attitude from someone who was obviously responding to the complaint they expected me to make rather than the one I was making. I had no choice but to escalate my complaint. This was already feeling like an unnecessary waste of time and effort and was having a detrimental effect on my blood pressure but I was left with no other option other than wait indefinitely for a response.

I next received a phone call from the newly appointed appointment booking manager. He sounded as though he was just coming to realise the magnitude of the task before him and I was just the tip of the iceberg.  We had a long conversation and he was very candid. The hospital was struggling to find qualified clinicians to fill the posts required to fulfil all the requested appointments. A backlog had built up and it was now at the point where if they did find the suitable staff then facilities would be the limiting factor. He was obviously doing his best but couldn’t practically schedule sufficient appointments to stay on top of the ever growing waiting list. His plan was to find some locum clinicians to concentrate on the backlog and just do the best he could. He couldn’t prioritise me as although effectively blind in one eye now, it wasn’t life threatening. To be fair, I didn’t want priority treatment, I just wanted to know that something was happening and it would eventually be resolved.

True to his word an assessment appointment came through in early June. I had a lot of questions and I thought this would be my opportunity to ask them. I had a complex history and given how important my eyes are to me and my work and the pressures on the NHS I wanted to ask whether I should be thinking about going privately and potentially looking at a multi focal implant. It would be expensive but a price worth paying for something so important. It was also important to me to know when / if they would operate on my right eye. It wasn’t yet at the point that it needed the surgery but it was well on the way. 

The assessment clinic was packed and we had a long wait past our appointment time. This is just something that one comes to accept with the NHS. When we got to see the consultant he looked at my eyes and said “You need to have these cataracts seen to.” I was a little stunned, that was why we were there… “So what next?” I asked. A pre-op assessment was the answer. I asked my other questions and was told that he had no idea and couldn’t comment as he was just a locum and didn’t work at the hospital usually. With that we were shown out. I’d waited four months to have an appointment with a locum who could give me no information on my possible treatment but correctly identified the reason why my optician had referred me in the first place. At least I was now in the system…

In July 2015 I had my pre-op assessment. I had been told that this would be with a consultant but as it happened it was with a nurse. The first thing she did was ask me to take my glasses off and then read letters off the chart. My prescription was -14 so without my glasses I’m doing well to see the chart let alone read anything. She seemed amazed when I couldn’t read anything and actually asked me, “can you see me?” and waved her arms.

They then put me on a machine that scans your eye and assesses what strength of lens you need to give you perfect sight following the operation. This is for distance only as you will need reading glasses for close up. It's all automated and apparently can’t be influenced by human error which was a relief as the nurse seemed confused by the results she was getting.

She couldn’t answer any of my questions so I left again not really knowing what was going on. I asked when I would see a consultant who could answer my questions and was told that it would be on the morning of the operation. I was not going to wait until that late stage to get answers so I complained to the Liaison Service again. After my previous experience I also went to see my GP. This process had dragged on so long that I now lived fifty miles from Bristol and had changed GP. The GP was brilliant though, assuring me that I wasn’t being a fussy bugger and that my questions were not only not unreasonable but he would definitely recommend me getting them answered before I proceeded. He said he would write to the consultant named on my GP records.

A week later I had a second pre-op assessment, this time with a doctor. He wasn’t a consultant but he would, I was told, be able to answer all of my queries. He had a copy of my complaint in front of him and he went through each point. Some of his resolutions were a little vague and along the lines of, “I’m sorry but there’s nothing we can do now” but one thing he did clarify was what would be needed for my right eye. Wearing strong glasses makes the image that you see smaller than uncorrected vision. He was very clear that I could not operate with only one eye treated as the images from each eye would be different sizes. I would definitely need both eyes done in quick succession but that the NHS would not, under any circumstances, do this as I could still see out of that eye. I needed to arrange a private consultation and surgery on my right eye.

When we got home from that appointment there was an appointment letter waiting for me with a consultant. This was as a result of my GP’s letter. As I was under the impression that I had already received the answers and clarifications that I sought I cancelled this appointment. The consultant was Ms Claire Bailey and having googled her she had an excellent reputation and an expertise in retinal medicine. For this reason I made a private appointment with her to discuss my right eye. She was on holiday so I couldn’t see her until early September. By coincidence I received a surgery date which was later the same week so it felt like things were coming together.

When I met Ms Bailey in early September and recounted my tale she was shocked and frustrated. It turned out she was due to take a more senior role at the health trust and would be responsible for overall clinical performance. She was most upset by the advice I had been given that I would need the second eye done privately. She stated that as I could not operate with only one eye done then the NHS had an obligation to do the second eye as well. She thought it wise if I was treated by her personally and so I cancelled my upcoming surgery with another consultant and awaited a new operation date with Ms Bailey.


The next post in the series will be up next Friday and will cover the operations...